ALSA C C E S S

THE NEWS MAGAZINE OF THE ALS ASSOCIATION FLORIDA CHAPTER

WINTER 2015

You Made A Splash!

For Florida Families Living With ALS

STAFFKim HannaPresident and CEOkhanna@alsafl.org - ext. 105

CARE SERVICESChristine Bright, MSWChief, Care Servicescbright@alsafl.org - ext. 130

Sheilla ThomasCare Services Admin. Asst.sthomas@alsafl.org - ext. 113

Heran Sisay, MARegional Care Manager,Greater Tampa Bayhsisay@alsafl.org - ext. 103

Aimee Freedman, BSWRegional Care Manager,North Central Floridaafreedman@alsafl.org - ext. 117

Judie Benwick, MSH, MPH, CHESRegional Care Manager,North Florida jbenwick@alsafl.org - ext. 112 Marixa Salgado, MSWRegional Care Manager,Central East Floridamsalgado@alsafl.org - ext. 109

Patricia Stanco, MHSRegional Care Manager,Southwest Floridapstanco@alsafl.org - ext. 110

Jessica Bianchi, MBARegional Care Manager,Southeast Floridajbianchi@alsafl.org - ext. 122

FUND DEVELOPMENTKatie CooperRegional Development Director, Ride and Walk to Defeat ALS kcooper@alsafl.org - ext. 115

Diana PerraultRegional Development Director,Walk to Defeat ALSdperrault@alsafl.org - ext. 111

The ALS Association Florida Chapter3242 Parkside Center Circle | Tampa, FL 33619-0907

Toll Free: 888-257-1717 | 813-637-9000 | www.ALSAFL.org

Kaila WilliamsRegional Development Manager,Southeast Floridakwilliams@alsafl.org - ext. 119

Carmen StokesRegional Development Manager,North Floridacstokes@alsafl.org - ext. 121

AWARENESSAlissa GutierrezMarketing & CommunicationsDirectoragutierrez@alsafl.org - ext. 120

ADMINISTRATIONLisa BublinecOffice Administratorlbublinec@alsafl.org - ext. 108

Robin SeeBookkeeperrsee@alsafl.org - ext. 104

Gabby HarrisonDonor Relations Directorgharrison@alsafl.org - ext. 101

BOARD OF TRUSTEESHiram GreenChairmanTim CummingsVice Chairman Renate ArmitageJan BergerWendy BitnerJohn CannistraKevin ConnKen GriffinRobert MillerWarren NelsonGlenn StambaughDeWayne StandiferDr. Sandi Torres

Kim HannaPresident and CEO

David SmithHonorary Board Chair

Combined Federal Campaign number CFC #69097

PRESIDENT’S MESSAGE

Kim Hanna

2

As 2014 comes to an end, I have to marvel at the turn of events that occurred this past summer, changing the course of ALS research, and certainly expediting our hopes for effective treatments and eventually a cure.

The ice bucket challenge was more than a catchy trend. The legacy this viral, social media phenomenon will leave for people living with ALS is nothing short of miraculous. Millions of dollars will immediately pour into research projects, and a long-term strategy has been developed by our National Board of Trustees to triple the funding for research. The ice bucket funds will also be used to support the Association’s Certified Treatment Centers of Excellence – two of which are located in Florida, at the Mayo Clinic Jacksonville and the University of Miami Kessenich Family ALS Center – which provide evidence-based, multi-disciplinary ALS care and services in a supportive atmosphere with an emphasis on hope and quality of life.

While we are so very grateful for the bountiful ice bucket challenge donations that will enable us to improve the most comprehensive pipeline for ALS treatments in the world, here at home in Florida, our need remains the same. We are continuing to provide care and services for families living with ALS in our state. In the following pages, some of the families we are privileged to serve will tell you, in their own words, how the Florida Chapter helps people with Lou Gehrig’s Disease. From support groups to financial grants, scholarships, clinic care and loaned medical equipment, the Chapter strives to be a beacon of hope for our families.

At the Florida Chapter we have a saying, “until there’s a cure, there must be care.” It’s our mantra. ALS is not only physically destructive, but financially and emotion-ally devastating as well. After an ALS diagnosis, families are left feeling blind-sided and confused – and some-times uncertain of where to turn and what to do next. The services we provide are critical to the fathers, moth-ers, husbands, wives, sisters, brothers and children who depend on us. With your continued support, the Florida Chapter will be there every step of the way. On behalf of the Board of Trustees, staff and volunteers at The ALS Association Florida Chapter, I’d like to thank you for your ongoing support and wish you and your loved ones a happy holiday season.

Sincerely,

3

ALS Awareness Game at the RaysOur largest annual awareness event took place on Au-gust 17, 2014, when the Tampa Bay Rays took on the New York Yankees in a tribute to Lou Gehrig and all of our heroes fighting ALS. Mark your calendars for Sun-day, July 26, 2015 for next year’s game!

4

The Kessenich Family ALS Center at the University of Miami Receives Center of Excellence Designation

The University of Miami’s Kes-senich Family ALS Center

recently received designation as an ALS Association Certified Treatment Center of Excellence. The ALS Association gives the certifications to a few select centers around the country based on the provision of multi-disciplinary patient care, active involvement in ALS research, and a strong relationship with The ALS Association Florida Chapter.

“Not only do we provide a compre-hensive range of services for our patients and engage in ground-breaking clinical and translational ALS research, but we also ensure that research is well integrated into patient care,” said Michael Benatar, M.D., Ph.D., professor of neurology, Walter Bradley Chair in ALS Research and Chief of the Neuromuscular Division. “This certification as a treatment center of excellence will give the center’s work in areas of patient care and research greater visibility.”

Patients referred for evaluation for suspected ALS are seen throughout the week. Newly diagnosed patients are seen in the “second visit clinic” to answer questions about the disease, establish an initial plan of care and to discuss research op-portunities.

The multi-disciplinary ALS clinic, run by Ashok Verma M.D., pro-fessor of neurology, and Ginna Gonzalez ARNP, D.N.P., Nursing Director of the Kessenich Fam-ily ALS Center, provides those in the advanced stages of ALS with a broad range of services includ-ing physical therapy, occupational therapy, access to a social worker, psychologist, nutritionist, speech pathologist, respiratory therapist, neurologist and nurses.

The center holds an Augmenta-tive and Alternative Communica-tion Clinic twice a month to assist patients with selecting the ap-propriate communication devices.

The Wheelchair Clinic, also held bi-monthly, helps patients with mobility requirements.

In addition to treating ALS patients, UM Miller School of Medicine neurologists and researchers are engaged in the full spectrum of basic, translational and clinical research focused on understand-ing the cause and biology of the disease, as well as both pre-clinical and clinical drug development programs.

“ALS has flown under the radar for many years but impacted millions of people,” said Benatar. “Patients locally and internationally know that they can come to Kessenich Family ALS Center for a unique and thorough approach to care.”

ALS Florida clinics are sponsored by The ALS Association Florida Chapter and the State of Florida, Deparment of Health.

2014 Recipients of The Sherry Murray ALS Medical Futures ScholarshipThe Sherry Murray ALS Medical Futures Scholarship is for students who have or have had a spouse, parent, or grandparent

diagnosed with ALS, and who want to pursue a degree in the medical profession as a result of their experience. For more

information about the 2015 scholarship, go to www.ALSAFL.org. Application deadline is July 10, 2015.

Catherine Gabrielle HoeppnerCatherine, 26, was born and raised in St. Petersburg, Florida. While she loves to travel, she

calls Florida home. She received her B.S. from the University of Miami (2010) with magna cum

laude and Phi Beta Kappa honors and her M.S. from the University of South Florida (2013) with

Phi Kappa Phi honors. Now, she is a first-year medical student at the University of Miami Miller

School of Medicine. Prior to matriculation, she has studied in Granada, Spain and worked and

volunteered in various health settings, including the Judeo Christian Health Clinic in Tampa,

Florida. She was named after her paternal grandmother, Catherine Hoeppner, who succumbed

to ALS after a courageous battle of two and a half years. Inspired by her grandmother, Catherine

is motivated to pursue medicine and help others in their fight against such adversity.

Brandon ReedBrandon, 31, is a native of Atlantic Beach, Florida. In 2002, his mother was diagnosed with ALS and his family struggled

through her illness. Brandon is studying to be a pharmacy technician at Sandford-Brown Institute in Jacksonville, Florida.

5

$34.2 million from ice bucket challenge donations earmarked for immediate use

ALS Research

After the generous outpouring of support from people all around

the globe due to this summer’s ice bucket challenge, the Board of Trustees of The ALS Association has approved an initial expenditure of $21.7 million in funding to sup-port six programs and initiatives to expedite the search for treatments and a cure for amyotrophic lateral sclerosis (ALS). Additionally, $12.5 million in matching donations bring the total commitment to $34.2 million.

Four of these projects involve global research cooperative alliances that would not have moved forward without this significant funding from The Association, made possible through the generosity of donors worldwide, along with matching gifts.

“We recognize the sense of urgency felt by people living with the dis-ease and their families and I want to assure everyone that our number one commitment is to making deci-sions that get treatments to patients in the fastest way possible,” said Barbara Newhouse, President and CEO of The ALS Association. “Our roadmap to treatments involves col-laboration with other ALS organiza-tions and with industry, university investigators, government agen-cies, pharmaceutical and biotech companies and other nonprofit organizations committed to the fight against ALS.”

During a 30-day period this sum-mer, The ALS Association received more than $100 million in dona-tions. Over the last few weeks, The Association has actively convened key stakeholder groups, including a panel of advisors made up of people living with ALS, to provide input into a comprehensive plan that The Association released in November after approval from the Board of Trustees. The bulk of The ALS Association’s initial $21.7 mil-lion commitment—$18.5 million—

will advance four new cooperative alliances for the next one to three years involving research that has been identified as critical to finding new treatments for ALS: ALS Ac-celerated Therapeutics (ALS ACT), The New York Genome Center, the Neuro Collaborative, and Project MinE.

There will be synergies between these four initiatives that will increase the quantity, and most im-portantly, the value of data openly available to the ALS research community worldwide. The ALS Association will play a pivotal role in coordinating these efforts.

Under the leadership of The ALS Association’s Chief Scientist, Lucie Bruijn, Ph.D., M.B.A., The As-sociation has been involved in the planning of each of these new col-laborations, and, in each case, has sought the advice and evaluation of leading researchers to assess scientific merit, to gather addi-tional ideas for each project, and to ensure the maximum relevance to future therapies.

THE SIX INITIATIVES:

ALS Accelerated Therapeutics (ALS ACT)ALS ACT is a novel academic-industry partnership to accelerate treatments for people living with ALS, which is able to proceed with a $10 million commitment from The ALS Association and matching gift of $10 million from The ALS Finding a Cure Foundation.

New York Genome Center (NYGC)The ALS Association and its Greater New York Chapter will match a $2.5 million gift from The Tow Foundation in support of a new project at the NYGC, which will bring together for the first time a world-class scientific team to fur-ther understand the genetic basis of ALS. Recent discoveries have in-dicated that genes may contribute

to a much larger percentage of ALS cases than previously thought.

Neuro CollaborativeThe Neuro Collaborative will combine the efforts of three world renowned California labs focused on ALS: Cedars-Sinai in Los Ange-les, the University of California San Diego and the Gladstone Institutes, an affiliate of the University of California San Francisco, to develop and expedite therapeutic approach-es for ALS.

Project MinEProject MinE is a global collabora-tion with the goal to sequence the genomes of at least 15,000 people with ALS in an effort to discover new genes that affect ALS, either increasing the risk for the disease or protecting against it. The ALS Association’s funding commitment of $1 million will enable Project MinE to expand to the United States.

Grants to Certified Treatment Centers of ExcellenceThe ALS Association and its net-work of chapters currently partner with 43 ALS Association Certified Treatment Centers of Excellence across the United States. Multiple studies have shown the value to a patient of attending a multidis-ciplinary clinic, including longer survival, increased quality of life, and improved access to potential therapies.

Regulatory Guidance to Expedite Drug DevelopmentOrganizations involved in two other neurological diseases (Alzheimer’s and Duchenne Muscular Dystro-phy) have seen great benefits in working to develop guidance for companies to help them navigate the regulatory pathway for approval of effective therapies.

6

Your Splashmade a difference...

Thank you to everyone who participated in the summer’s ice bucket challenges. We could not have anticipated the extraordi-nary amount of awareness, publicity and unexpected resources that flowed in to The ALS Association and the Florida Chapter.

We wanted to share with you the stories of the people we serve – people who are directly helped by your donations. Your support makes an incredible impact on people living with Lou Gehrig’s Dis-ease right here in Florida, and contributes to our critical research efforts.

On behalf everyone at the Florida Chapter, we want to say thank you for taking the ice bucket challenge and for making a differ-ence for someone living with ALS.

7

Ice Bucket Challenge

7

8

“Support systems. Huge. A huge concept, es-pecially when one has a horrid disease. A fatal disease. This disease. ALS. If you have net-worked with people on a deep level, you are in good standing regarding some things, and then for other things, those things you know little about... Well, I’d say you need some help. Even though I was a special education teacher for over 35 years, and did some social work, I wasn’t prepared for this and the breadth of my needs. Neither were my family or friends. Good thing The ALS Association Florida Chapter is working with agencies around the state. I was immediately hooked up with a social worker to discuss my future needs and my family needs. What a wonderful help. I was also given some information about the Five Wishes and what that means, as well as power of attorney and other potential issues. I wasn’t ready to deal with it at the time, but this past year, my oldest daughter, Ida, and I took care of many things. It was a huge burden off of my shoulders.

I am two years into the disease, have attended two Advocacy Days in DC, and an FDA hearing in Maryland. I have a team of over 120 walkers to raise awareness and money, and am a part of a larger network to continue this fight. The ice bucket challenge has assisted me in obtaining a grant for ADL tools, as my functioning is steadily declining, and now has funded the ALS clinic for more research at the University of Miami, of which I am a part of. In fact, I have already participated in two studies.

The importance to fund research is essential, and the importance to fund support is paramount. Many people don’t realize the everyday struggles we go through, and the systems outside of our family make a huge difference to us. The groups and seminars assist us in understanding new developments is the fields of communication, nutrition, and home care, as well as the advances in research. This ice bucket challenge has brought new hope and energy to an orphan disease, and to us for our future. We continue to be hopeful and strong, as long as we do this together.”

Deb Gaudet

SupportYour donation allows us to help people diagnosed with ALS find the ser-vices and information they need. From how to navigate confusing insur-ance issues to finding clinical trials, the Florida Chapter provides help. For patients like Deb Gaudet, it’s made a huge difference.

Deb Gaudet

Donate to the Florida Chapter at www.ALSAFL.org

The Florida Chapter offers resource support groups throughout the state every month. These groups offer patients, families and caregivers a private, safe environment to seek emotional support, share ideas and gain information and insight. Groups are facilitated by trained Care Services staff members, and take place in more than 21 cities in Florida.

9

Support Hope

“I have always wanted to be a nurse. I’ve never known a time when I didn’t want to be one. Growing up basically in the hospital probably has something to do with it.

My mom was a nurse for 36 years and every little girl wants to grow up to be like their mom, right? When I went to college, I knew that being a nurse was still what I wanted to be. Luckily, I started my journey towards this goal two years ago and recently passed my boards and became a real live Regis-tered Nurse in late August 2014.

As my mom deteriorated from ALS, I realized that I could start using the skills that I learned in school. But most importantly, I was able to use skills and attitudes that my mother taught me over the years about how to be a loving, caring, passionate nurse.

I was fortunate enough to come home every day and share what I learned in school with my mom. Seeing her face light up like a Christmas tree while we were talking about nursing is probably one of my fondest memories of her and I will always remember and cher-ish those times.”

Mandy Auker

Mandy Auker with her mom, Nina

Your help funds programs like The Sherry Murray ALS Medical Futures

Scholarship. This scholarship allows the spouses, children and grand-

children of ALS patients to pursue a career in the medical profession.

Mandy Auker lost her beloved mom, Nina, to ALS last year. With the

help of people like you, she will become a nurse, just like her mom.

Donate to the Florida Chapter at www.ALSAFL.org

For more information about The Sherry Murray ALS Medical Futures Scholarship or to apply, go to: www.ALSAFL.org.

10

“The month of August brought so much hope. Each morning, I couldn’t wait to log on to Facebook to see the latest ice bucket challenge videos. The sup-port that people showed all over the world for ALS was incredible. I am so grateful for the awareness that has been brought to light and for the generous donations that were received by The ALS Association, specifi-cally to the Florida Chapter.

ALS not only brings physi-cal and mental challenges, but financial challenges as well. I went from working 60 hours a week, to being a recipient of social secu-rity disability. The ALS As-sociation Florida Chapter understands. They offer grants to patients who apply. I live in an apartment that has a beautiful balcony, but was unable to get outside. With a home modification grant from the Florida Chapter, I was able to purchase a ramp to get outside and enjoy the “Salt Life.” A few months ago, the ramp in my van broke, and the cost to fix it was very high, and again The ALS Association Florida Chapter stepped in to assist in covering the cost of the repair.

I am humbled and grateful for the kindness and generosity of so many, and hope people will continue to donate to the Florida Chapter – with increased donations, they can continue to help patients like me, and their families.”

Jeff Arison

With your support, we can provide CARE Assist grants for patients like

Jeff Arison, helping them to remain in their homes with quality of life

and as much independance as possible.

Assistance

Jeff Arison and his sister, Andrea Arison

Donate to the Florida Chapter at www.ALSAFL.org

CARE Assist grants are given to ALS patients who are Florida residents and registered with the Florida Chap-ter and who need financial help with: • respite for a family caregiver • home modifications and van modifications

• medical equipment not covered by health insurance • the cost of medical equipment repairs and van repairs

11

CareYour help allows us to support the ALS clinics and research centers in

Florida. Multidisciplinary clinic care is critical to maintain quality of life

for families like the Rodriguez’s.

“Santos and I have been happily married for 32 years. We have a daughter, Kimberly, married to Ranier War-ner, and a son, Santos Jr., recently engaged to his sweetheart, Tif-fany, and two beautiful granddaughters, Jay-ann and Tianee.

As heartbreaking as it is, Santos was di-agnosed with ALS in November 2011 at the age of 48. Shortly after that, while research-ing about ALS, I came across The ALS Associ-ation Florida Chapter. I immediately contacted them and that was the very best thing that has ever happened to us. The Chapter, their staff and their help and support have been a blessing. One of the wonderful things they did was to refer us to the USF ALS Clinic in Tampa. Santos has been going to the USF ALS Clinic for at least two years. The attention, help, medical care, support, resources and dedication of this clinic has been immeasurable. We are truly blessed and thankful for having a group of dedicated professionals that truly care!”

Santos and Maria Rodriguez

The Rodriguez Family

Donate to the Florida Chapter at www.ALSAFL.org Donate to the Florida Chapter at www.ALSAFL.org

• medical equipment not covered by health insurance • the cost of medical equipment repairs and van repairs

The Florida Chapter supports two ALS Certified Centers of Excellence: the Mayo Clinic Jacksonville ALS Certi-fied Center of Excellence, the University of Miami Kessenich ALS Certified Center of Excellence, and three ALS Florida Clinics: the Lee Memorial ALS Clinic in Ft. Myers, the Shands Neuromuscular Clinic in Jackson-ville, and the University of South Florida ALS Clinic in Tampa. Multidisciplinary ALS clinic care can improve the quality of life and extend the life of a person with ALS. The Chapter’s support is critical to making this care available for patients in Florida.

12

“Eric and I have much to be appreciative of. In October of 2012, we received a call from The ALS Association Florida Chapter, informing us that we were selected to receive a donat-ed wheelchair/handicapped van from the family of Robert “Bobby” Ray. I felt so excited, blessed and relieved when I received the call at work, I then called home and spoke with Eric, I shared the news with him and we both cried with joy.

Receiving such a huge blessing granted us the freedom to enjoy our lives and focus on creating memories, regardless of the circumstances.

The ALS Association Florida Chapter has been a huge supporter in supplying needs to peolple with ALS and their families, and for this we, the Chapmans, are forever grateful.”

Margie Chapman

FreedomYour ongoing donations help the Florida Chapter with programs such as

the “Caring Van Network.” Through this program, patients like Eric are

connected with a used, wheelchair-accessible van – giving him and his

family the freedom to come and go as they wish. It’s something most of

us take for granted, but to Eric, it’s everything.

Eric Chapman

Donate to the Florida Chapter at www.ALSAFL.org

The Helping Van Program is only one of many services provided by the Florida Chapter. For someone with ALS, medical expenses can quickly become devastating. The Chapter’s statewide loaned medical equipment program ensures that patients can get the things they desperately need to live with Lou Gehrig’s Disease and maintain quality of life.

13

Comfort

“The startling diagnosis, ‘You have ALS,’ was not a total surprise to Bill and me. We had Googled Bill’s symptoms while going through the slow process of eliminating other possible diseases at Mayo Clinic in Jacksonville. Dr. Boylan told us a new ALS Clinic was starting in Tampa and we should start seeing Dr. Katzin and we immediatly got in.

It was at USF’s ALS Clinic that I met Christine Bright, The ALS Association Florida Chapter’s Chief of Care Services. I was angry and I wanted to fight ALS. Chistine, with her soft reassuring voice, started telling me how important it was to make Bill comfortable. Her words that day changed my focus and my fight became doing everything I could to make the rest of our lives together the most im-portant thing in my life.

I was lost after Bill passed away, but the fighter in me became a volunteer for the Florida Chapter. I am involved in the many fundraising opportuni-ties that they have to raise money to help other ALS families. After learning of the importance and need for donated tissue from ALS patients, Bill donated his brain and spinal cord for ALS research, and I encourage others to do the same. And as the leader of Tampa’s Next Chapter Program, the Florida Chapter’s social renewal group for people who have lost a spouse to ALS, I have found a way to help other people affected by this disease.”

Sam Maybrook

It’s the worst day that most families can remember – an ALS diagno-

sis. But with the care and guidance of the Florida Chapter, families can

navigate the difficult times ahead. Thanks to you, we will continue to

offer hope and help to people fighting this insidious disease.

Sam and Bill Maybrook

Donate to the Florida Chapter at www.ALSAFL.org Donate to the Florida Chapter at www.ALSAFL.org

The Next Chapter Program is The ALS Association Florida Chapter’s social renewal group made up of men and women who have lost a spouse to ALS. It’s an opportunity to meet other people who have traveled the same journey. There are Next Chapter Programs across the state.

14

Thank You!2014 Walk to Defeat ALS

15

Thank You!2014 Walk to Defeat ALS

16

Thank you for supporting the 2014 Walk to Defeat ALS – it was

Thank you to all of our teams, families and sponsors!

Ability Medical Supply, Inc.

ATP Tour, Inc.

Boar’s Head

Brumos Companies

Copytronics Information Systems

Czaia Law

D.S. Eakins

Edyth Bush Charitable Foundation

Florida Crystals Corp.

Florida Power & Light

GrayRobinson, PA

Key Buick-Hyundai

Mobility Solutions, LLS

TD Medical Inc.

Wilde Automotive Family

17

2014 Top Fundraisers Ft. Myers Hilde Heard ($11,510)Tallahassee Genie Everett ($1,700)Ocala Geniece Black ($2,795)Broward/Miami-Dade Linda Aversa ($11,536)Central Florida Debra McCloskey ($14,685)Greater Tampa Bay Carol Hermes ($21,133)Palm Beach Dorothy Bradshaw ($38,448)Jacksonville Alecia Bailey ($30,355)Sarasota John Cannistra ($12,197)

2014 Top TeamsFt. Myers Hilde’s Heard ($11,510)Tallahassee Team Everett - Walking for Jimmy ($2,775)Ocala Walking Believers ($4,200)Broward/Miami-Dade Deb’s Boarding House & Cafe ($23,725)Central Florida Brevard Support Group ($25,386)Greater Tampa Bay Team Hermes ($34,885)Palm Beach SpenWen ($69,484)Jacksonville Scott-McRae GroupTip’s Trotters ($32,000)Sarasota Team Kathy Cannistra ($13,977)

Florida Crystals Corp.

Florida Power & Light

GrayRobinson, PA

Key Buick-Hyundai

Mobility Solutions, LLS

TD Medical Inc.

Wilde Automotive Family

18

Gifts to The ALS Association Florida ChapterWe would like to thank our generous donors for their support. These contributions help us provide vital patient services, programs, and fund worldwide research.

MEMORIAL GIFTS

Gifts of $250 or more, made in memory of a friend or loved one, between 3/1/14 - 9/30/14.

WALK AND RIDE TO DEFEAT ALS GIFTSGifts of $500 or more, made between 3/1/14 - 9/30/14.

Brenda Antwine - Vicki and Steve AntwineFloyd Antwine - Vicki and Steve AntwineLaurie Ashley - North Florida Financial CorporationDavid Bitner - Detert For Senate CampaignLarry Bottom - GSB Family Foundation, Inc.Paul Brosnan - Carol and Ken-neth Mackey through Fidelity Charitable Gift FundJim Buckley - Stephanie Rags-daleJoseph Connolly - Citizens Bank FoundationTodd Cook - Edgardo and Val-erie InsignaresTom Cooke - Caren HendrenReese Coppage - P.N. Risser through the Community Foun-dation of Tampa Bay, Inc.Don Curts - Susan Curts,Marcia Mederos, Betty SandersRosalie Deitchman - The Deitchman Family Fund at Vanguard CharitableBrad Drewett - Michael LuevanoMelvin Einhorn - Marilyn Ein-hornJimmy Everett - Albert GimbelLes Foster - Lynn SapienzaGeorge Hahn - Robert Grayson,Lawrence LymanRichard Hickman - Andrew and Eileen HaferJ. Bob Humphries - Dr. Barbara Bachman-Humphries,Joanne HigbeeKeith James - Stefanie DhandaRosalind Jeffrey - Keith FayettPeter Klein - Paul Cummings,

Jacob Ferreira, Robert Klein,Robert NormanRichard Kraus - Patricia and Ernesto DuarteEdith Kravitz - Kraft Foods Foundation Matching Gifts ProgramLonnie Lewis - Dr. Jason LewisJohn Lore - Dr. Suzanne KnoxScott Lovett - Kevin PascoeDr. Virgil Lundquist - Mary and Jeffrey ParsonsWilliam Maybrook - Sharon MaybrookDavid Maynard - Andrew Carl-sonJames McCasland - Macy’s Matching Gifts ProgramMaureen Miller - Robert MillerDebra Moshier - First Baptist Church Altamonte SpringsErnst Mueller - Mr. ManateesNancy Mueller - Susan CurtsTom Muessel - Lars SoreideSherry Murray - Susan CurtsJames Paquette - Frances Du-mas and Richard PaquetteShantilal Parekh - Sarla ParekhAnne Pembroke - Michael Pem-brokeWilliam Poremba - Susan CurtsNancy Pottruck - Steven Mar-cusRichard Probus - Orlando Cessna Citation Service CenterJames Robertson - Kenneth RobertsonDaniel Sargent - Rocco MangelCharles Schutt - Mark AaroenAnne Sisk - James Monroe,Niceville Insurance Agency, Inc.Jere Spence - Marianna Spence Susan Spencer-Wendel - NBCUniversal Media, LLC, Royal Poinciana Chapel Inc.,Deanna ShullmanRob Squires - Scott Gramling,Lord Abbott & Co., LLC, Robert Sayre, Randall Squires, The

Arthur J. Gallagher Foundation,Phyllis WatersVicki Tremble - Sue HedgepethReid Vannoy - Gwen Keiser,David WilliamsEric Vartdal - William MesserDr. Michael Veitch - David ButlerTony Wall - Athletes FirstJimmy Workman - Gail Workman

1st Place SportsAbility Medical Supply, Inc.Adeeb’s Food ServiceHarry AinsworthAnni AltzAmerican Association of Univer-sity WomenATP Tour, Inc.Linda AversaAlecia BaileyJohn Bailey, Sr.Bank of America Charitable FoundationRochelle BarkerMatthew BarnesBaseball Jax, IncDr. Todd BatenhorstWilliam BeckerDennis BehrensPhilip and Shannon BerlinskyMichael BeyerDouglas BielefeldBoar’s Head ProvisionsBono’s At JTB, Inc.Bono’s of North FloridaBono’s Pit Bar-B-QE. Bruce BowerShannon BowmanDudley BoydYves BoyerDorothy BradshawBright House Networks

19

Walter BrinkmanWilliam BrinkmanLeilani BrochardPatricia BrockC & C Insurance, Inc.Craig CabralSharon CabralCatherine CampbellGerald Carey, IIJoel CataniaJessica CheathamSam ChildersJae ChungA. CiarrockiMacDonald ClarkColdwell Banker Residential Real Estate CaresCherri CollinsJohn CollinsRobert Collins, Sr.Tina CollinsCollins Manufacturing, IncComfort KeepersCommunity Bank & Trust of FloridaJoAnn Sears given through the Community Foundation for Palm Beach and Martin Coun-tiesScott ConroyContinental Freight ForwardingCopytronics Information SystemsCSX TransportationTim CummingsJeffery CurryApril DalyGary DassattiMaureen DayDeBartolo Family FoundationTracy DeeterVivian DesjarlaisDiamond Dental of SunlakeJohn DickinsonDenise DiMarePaul DiMarePaul DiMare, Jr.Scott DiMareKaren DonaldsonKen DonaldsonDave DooleyLois DubinLisa DuBoisIrene Dyer

Linda EckleyMargaret EdmistonJoe EleccionFail PropertiesLloyd FayAlan FicklingDenise FinleyGeorge FitzgeraldPeter FlanaganFlorida Power & LightForge Capital Partners, LLCJosephine FosterAndrew FoxConnie FrankinoAlfred FriedmanPhilip GallowayRich GerberJustin GimelstobSam GoforthAlex GrahamDiane GrahamGraham Holdings Matching Gift ProgramKaren GrayGrayRobinson, PAHarold GreenbergWilliam GroomGrooms Benefit SolutionsDr. Nelson GumucioMary HalfordSteven HalversonBridget HammondHarden & AssociatesTim HarleyPatsy HarperO. HawkinsMark HealyJames HeislerCarol HermesDorothy HicksLisa Hicks-WaggonerDavid and Cara HodgesKathy HolzerStephen IrwinAmy JamesJB of Florida, Inc.Tod JilgJPMorgan ChaseBeat KahliDavid KazarianCaitlin KellyKeith KempBetty KenanCandice Kenan

James KenanKey Buick-HyundaiJulie KimeRobert KingNancy KinnallyKiwanis Club of Sun City CenterAlbert Knorp, Jr.Gary KriegerDouglas KruthFumiko KubaKeith KuppermanDiane KurinskySherry LedbetterKatherine LipkeLips RestaurantJohn MaciewiczHarvey MacklerDennis MartinoSharon MaybrookGeoffrey MayfieldAnna MaymanMayo Clinic JacksonvilleScott McCrearyPat McGrathPat McGuinessPatrick McKennaMcMaster Family FoundationElizabeth McRaeMarcia MederosWilliam Young given through Merrill LynchMFB Financial Inc. dba The Bailey GroupHarriett MillerRobert MillerRowland MillerCharles MilliganLeslie MoranMorris & Reynolds InsuranceGregory MoshierWilliam MotleyLarry MottMona MotzJeaneen MullerMyers Precision, LLCMichael NadolskiIshwar NaranNavy Federal Credit UnionWarren NelsonMark Bailey given through New York Life InsuranceBrian NewtonJoan NewtonSusan Ober

20

Joan Oklevitch Rachele OrsiniKristin ParksJoel PashcowPhilip PeekPermobilJanice PeroLynn PetersonRobert PhaneufPhi Delta Theta FraternityPhillies Charities, Inc.Phillies Florida, LLCGregory PichardoLou PiniellaDonna PostElizabeth PrinceBelenda PrudhommeDr. Joe PrudhommeRaccoon’s Bar and GrillCharlotte RaynorVicki RedmanKevin ReedVictor RiceRide-AwayRipley Entertainment, Inc.Ripley’s Believe It or Not!Rock by the Sea, Inc.Ronnie Brock Transport, Inc.Julia and Jerry RudyBetty SandersMarqueta SchauwekerRichard SchefterGail SchubertAdam SchwartzEllery SedgwickChevron Matching Gift ProgramLauren SimmonsTim SleethTheresa SmithStephanie SolerSomatic Synergy, Inc.Jeff StanislowSarah StephensSteve & Albert Doria’s Shell StationRobert StevensDr. Dennis StewartSuarez Optical, Inc.Geraldine SullivanFrank Tantillo, IIITelecom Pioneers -WPB CouncilTest and Balance CorporationThe Bailey GroupC &H Graham Family Fund

given through The Commu-nity Foundation for Northeast FloridaThe J.M. Rubin FoundationThe Oaks Club CorporationThe Parts HouseThe Prevor Family FoundationThe Sam Sciturro Family FoundationThe William H. Pitt FoundationSteven ThibodeauStuart ThompsonToys R UsTransinvest Logistics and In-vestmentsTriple S Mobility, Inc.Len TuckerTimothy TurnerUniversity of Florida Health at JacksonvilleKristen Van der LindeNathalie VazquezKathryn VecellioMichael VecellioWalmart FoundationWilliam Warren, Jr.Malivai WashingtonPatricia and Ray WashingtonWeiss, Handler & Cornwell, P.A.Scott WeltyWestern High SchoolMaryann WildeHerbie WilesWillis FoundationBeverly WolfeLee WoodworthZenithOptimedia Matching GiftsNina Zuppa

GENERAL GIFTS Gifts of $500 or more, made between 3/1/14 - 9/30/14.

Aaron Bean Campaign AccountAccessibility Services, Inc.ACI WorldwideACR Electronics, Inc.Akerman, LLPAlgenol Bifuels Inc.Donald AllebachAmvets Auxiliary Post No. 4James AndrewsPeter Austin

Michael and Jean BachmannBen and Marcia BaldanzaBear’s Paw Country Club, Inc.Beazer Homes Corp.William BeckerLewis BeloteBill Jarrett Ford, Inc.Bimini Superfast OperationsAllan BradeenStuart and Dora BuckinghamC3 Investment Holdings, LLCCamping World RV SalesCape Coral Irish American Club-Central Florida Friendship LineClearwater Yacht ClubCoachCommerce National Bank & TrustDavid C.G. Kerr Memorial Fund at the Community Foundation of Tampa BayCommunity Health Charities of AmericaCommunity Health Charities of Florida, Inc.Rudolf ConsoniConstruction JournalCopperhead CharitiesStephen and Jennifer Blume through Copperhead CharitiesTim CoultasJune CoutlangusCSX Good Government Fund PacMatchD’Agostino FoundationDebra Butler Design StudioJames and Joanne DoughertyJerry CibalkaEllen ClarkAmala DuggiralaDyer Chevrolet Ft. PierceMichael and Stacey EnglanderJohn EvansCarol and Kenneth Mackey at Fidelity Charitable Gift FundMinutolo Family Charitable Fund at Fidelity Charitable Gift FundThe Murray Family Gift Fund at Fidelity Charitable Gift FundFirst Presbyterian ChurchMario FiumaniFlorida Power & Light CompanyFlorida Public Utilities

21

Nancy FollmanDr. Ferdinand FormosoFoundation for Christian MinistriesDaniel FrateJames GannonMeritt GardnerPeter GeigerPatricia GentileGlenn Anderson Memorial Golf TournamentLaura Goldblatt-JessenHoward GruvermanGulf Stream School, Inc.Merav HaleviDebbi HanfordPhilip HeasleyCommissioner Sally HeymanWilliam and Wendy HolmesCarolyn HombergerHTK Holdings, Ltd.James HuberIce Cold AirIOMC SS CrewIron Order Motorcycle Club “The Hill”Iron Order Motorcycle Club Tampa Chapter, LLCJohnson & Johnson Matching Gifts ProgramKeith KempClyde KeysJustin KlocmanDebra KoehlerLaunch Federal Credit UnionLawton Chiles Elementary PTAJeanette LewisJoseph and Jaye MaddonSean MaguireMarriott Beach Place TowersMarvin and Melissa U. Gill Fam-ily Foundation, Inc.Angeline MertzChristopher MettlerIngeborg MichaelsMike Alstott Family FoundationJohn MontesanoCarla MooreDavid MorganMarie McCasland through Mor-ganStanley SmithBarneyJohn MurphyThe Faith Giving Fund at National Christian Foundation

JacksonvilleThe Moore Family Charitable Giving Fund at National Chris-tian Foundation South FloridaThe Q’Straint Foundation Fund at National Christian Foundation South FloridaMark and Carmen Johnson Charitable Fund at National Philanthropic TrustWarren NelsonNetwork for GoodNew York Yankees Tampa FoundationMichael and Erin NicklerOcala Jeep Club of FloridaOcean Deck Restaurant and Beach ClubJoan O’ConnellPatrick Henry Creative Promo-tionsRandall PeelerThomas and Margaret PerryFrances PhillipsAnthony and Colleen PolimeniPrime Meridian BankDr. Apratim PurakayasthaRayonier Advanced Materials FoundationRays Baseball FoundationRobert ReynoldsRich Family FoundationRubin Obstgarten Family Foun-dationS.R. Perrott, Inc.Sam W. Klein Charitable Foun-dationSandpearl ResortSatellite High School Peer Counseling ClubHeather SaulsJoan SchuckenbrockGwen ScottAnthony ScottoScrippsSgt. Paul R. Smith Middle SchoolKathi SkaarAllen SmithTampa Bay Beach BoppersTenetThe Oxford Exchange LLCThe USAA FoundationTomlin Middle School

Scott VanekThe James L. Robo and Mer-edith B. Trim Charitable Gift Fund at Vanguard CharitableVentura Lakes Social Club IncVortex Automotive, LLCKathryn Wabol-CableWaters Edge RecoveryScott WeltyCharles WhiteJeremy WilmotZier, Inc.

Volunteers Needed

Want to help out? Volun-teers are needed state-wide to help the Florida Chapter with various tasks.

Help is needed for our Walk and Ride to De-feat ALS events, office assistance, and various other volunteer duties.

Email Christy Harbert at charbert@alsafl.org if you would like to help.

HONOR GIFTS To honor a friend, loved one, special occasion or event. Gifts of $250 or more, made between 3/1/14 - 9/30/14.

In Honor of Charles Abbott Niceville Insurance Agency, Inc.James Wonsick

In Honor of Danny Cerione Susan HillCarol Jordan

In Honor of John Chapline Valerie McCausland

In Honor of John Collins Patricia Marshall

In Honor of Mary Davis Grimaldi Fund at Essex County Community Foundation

In Honor of Dr. Egbert DeVries Jan DeVriesTina DeVriesThe Spiritus Fund at National Christian Foundation South FloridaUnity United Church of Christ Youth

In Honor of William Elston William and Phillis Monie

In Honor of Richard Graham James Graham

In Honor of Vincent Heffern Joseph Heffern

In Honor of Carol Hermes Pam Morgan

In Honor of John Hess Margaret Ruzika

In Honor of Michael Hooley Shannon Hooley

In Honor of Dale Hopkinson Johnson & Johnson Matching Gifts Program

In Honor of Derrick Jensen J.R. Arnold High School

In Honor of Priscilla Leach Priscilla Leach

In Honor of Roy Leinweber Lisa Palmieri

In Honor of Dr. Kimberly Lovell Janet Rinks

In Honor of Joan Madden Janice Strickland

In Honor of Larry McCraney Michael Buckstein BarrdayJonathan MacNeil

In Honor of Shad Ramsey Jerry McGee

In Honor of Maynard Rissmiller Michael Fox

In Honor of Jeffrey Schryver Mauricio CastilloBeth Higgs MabonRichard MeliTiffany Weisert

In Honor of Susan Shallbetter Robert and Susan FersonNancy JohnsonWilliam and Susan Shallbetter

In Honor of Sandra Tomlins Suzanne Dowd

In Honor of Mary Lou Toye Ed Murray

In Honor of Karen Walker Denise Ottaway

In Honor of Phyllis Wilkens Larry and Pamela Powers

In Honor of Rev. Adrian Wingate First Baptist Church of Milton

Every attempt has been made to ensure the accuracy of each gift and name. If we have made an error, please accept our apology and let us know by contacting Gabby Harrison, Donor Relations Director, at gharrison@alsafl.org.

22

In Honor of Roy Leinweber Lisa Palmieri

In Honor of Dr. Kimberly Lovell Janet Rinks

In Honor of Joan Madden Janice Strickland

In Honor of Larry McCraney Michael Buckstein BarrdayJonathan MacNeil

In Honor of Shad Ramsey Jerry McGee

In Honor of Maynard Rissmiller Michael Fox

In Honor of Jeffrey Schryver Mauricio CastilloBeth Higgs MabonRichard MeliTiffany Weisert

In Honor of Susan Shallbetter Robert and Susan FersonNancy JohnsonWilliam and Susan Shallbetter

In Honor of Sandra Tomlins Suzanne Dowd

In Honor of Mary Lou Toye Ed Murray

In Honor of Karen Walker Denise Ottaway

In Honor of Phyllis Wilkens Larry and Pamela Powers

In Honor of Rev. Adrian Wingate First Baptist Church of Milton

IN MEMORY We extend our sympathy and continued support to the family and friends who have recently lost their loved ones to ALS. We remember their courage in living and keep their spirits alive in our memories and hearts. Descedents from 3/1/14 - 9/30/14.

Rebecca AdamsJohn AglianoLeonard AndersonLaurie AshleyRosalie BarciaJane BauerCharles BeardGrace BilleciAntonio BoletLarry BottomMelvin BradleyLawrence BreinerPaul BrosnanCheryl BucciEileen BullionRichard CabralKevin CardBirgitte CarlssonAnthony CesareCorey CoughlinGary DavisDolores DeeryRobert Destasio, Jr.Shirley DowlingLawrence DuganWanda DykesDenise EberlyDavid EdwinsBarbara EhlertLaurie EllisGeorge EnglishDonald EpsteinDonna FernaldCarlos FernandezRobert FerraraGregory Ford

Les FosterRichard Fox, Sr.Faye GardnerIsaak GottfriedKarl GreerGeorge HahnTeresa HarrisAndrew HarshmanGary HerbeinWalter HerbsterThomas HilbertSpessard HollandDonald HoranCarol HysackHerschel InnisMark JamesRichard JenkinsFrank Johns, Jr.Barbara KaneWanda KeiserJudith KempPeter KleinChristopher KloveJanice LarsenBetty LeeWillie LinderLatisha MaconJames MagillNancy MaySherry McDowellNancy MillerAlice MilwoodJoan MontplaisirPaul MorelewiczDebra MoshierJames Murray

Alvis MyersDenise NadolskiDavine NelsonWilliam NoleenThomas OhlsonJames PaquetteHugh PittockArthur PowersRaymond PowersMargaret PuffinburgerDavid PughGerald RabinowitzJohn RaineriCorey RobichauxWilliam RossConstance ScottGary SimonAnne SiskPeggie SitArthur SmithGarry SmithSusan Spencer-WendelMonika StegleLorainne StorrowBonnie StrangRebecca TabakaRalph TassieMary TerrellRovene ThirtyacreRogelio VazquezAntonio VenturaGary “Doc” WeltLawrence WhiteJimmy WorkmanWilliam Yandow

23

24

SPECIAL FUNDS These funds allow The ALS Association Florida Chapter to provide help and services in a variety of ways.

To set up a special fund in honor or memory of a friend or loved one, call Kim Hanna at 888-257-1717,

ext. 105.

The Sherry Murray ALS Medical Futures Scholarship FundProviding scholarships for medical and related programs for spouses, children and grandchildren touched by ALS.

The David C. G. Kerr FundProviding funds to fight ALS in the area of greatest need.

The Evan J. Yegelwel Fund at The ALS Association Florida ChapterProviding funds to fight ALS on all fronts-awareness, patient care, advocacy, and research.

Harold L. Wilde ALS Research FundProviding funds for ALS research.

Maureen Slattery Miller Care FundProviding funds for home modifications, transportation, and other necessities of patients in financial need.

The Scott A. Mackler, MD, PhD Assistive Technology ProgramEnhancing the quality of life for people living with ALS by providing assistive technology devices.

LEGACY SOCIETY Recognizing and honoring those who have advised us of their plans to leave a future planned gift to The ALS Association Florida Chapter.

Peter Sidney ChurchillAnonymous

Mrs. Patricia M. Franks

Leon GanungAnonymous

Kim A. Hanna

Rebecca Huffer

Nelson E. LeBarron

PROMISE FUNDS Promising to help create a tomorrow without ALS.

The Dr. Pablo A. Suarez ALS Promise Fund

Italicized names reflect members who are deceased. For more information about The Legacy Society, contact

Kim Hanna at:888-257-1717, ext. 105 or

Khanna@alsafl.org.

Judith J. Moore

Sherry L. MurrayRichard Nimphie

Francis F. Oppedisano

Jacqueline A. Oppedisano

Becky Rizzuto

James M. Robertson

Ruth Shively

Thomas D. Stevens, Jr.Marie E. Turianski

Eleanor WeidemeyerJohn H. Weidemeyer

25

Building Hope through Help

HOPE AND HELP SYMPOSIUMThe ALS Associaton Florida Chapter’s

Saturday, February 21, 2015

Orlando, Florida

Join us for a day of informative sessions for patients, caregivers and supporters of people with ALS, keynote speakers, a vendor fair, and a town hall meeting. A luncheon will be held and our Ambassador of Hope awards presented.

Register today at: www.ALSAFL.org

2015 Presenters

Lucie Bruijn, Ph.D.

Chief Scientist,

The ALS Association

David Moses

Director of Gift Planning,

The ALS Association

Patricia Stanco

Regional Care Manager,

Florida Public Policy

Advocacy Director,

The ALS Association

Florida Chapter

The ALS Association Florida Chapter3242 Parkside Center Circle, Tampa, FL 33619

Toll-free: 888-257-1717 | www.ALSAFL.org

Hilton Garden Inn Lake Buena Vista11400 Marbella Palm Ct., Orlando, FL 32836

Cost: $20 per person, includes luncheon. Patients and one caregiver - free.

Special room rates available at the Hilton Garden Inn Lake Buena Vista in Orlando. To register or for more information, visit:www.ALSAFL.org.

26

RIDE2014

TO DEFEAT ALS

For more photographs, go to www.PortraitsforPatriots.org.

27

Every attempt has been made to ensure the accura-

cy of each gift and name. If we have made an error,

please accept our apology and let us know by con-

tacting Gabby Harrison, Donor Relations Manager,

at gharrison@alsafl.org. I

talicized names reflect donors who are deceased.

RIDEThank you to everyone who supported our 6th Annual Ride to Defeat ALS on Saturday, November 8, 2014. It was a wonderful day and we look forward to seeing everyone next year!

For updates and information, like us on Facebook at: https://www.facebook.com/floridaALSride.

www.RidetoDefeatALS.org.

THE ALS ASSOCIATION Florida Chapter The ALS Associaton Florida Chapter, Inc.3242 Parkside Center Circle Tampa, FL 33619-0907

NONPROFIT ORG

U.S. POSTAGE

TAMPA, FL

Permit No 2910

PAID

Save The Date!2015 Florida Walk to Defeat ALS® Dates

Broward/Miami Dade - Feb 28

Central Florida - March 7

Greater Tampa Bay - March 14

Palm Beach - March 21

Jacksonville - March 28

Sarasota - April 11

ALS Support Groups

Join us at an upcoming resource group to find practical advice on day-to-day living with ALS and a safe place to express your concerns. Everyone is welcome.

Boynton Beach Charlotte Daytona-Ormond Beach Fort Myers Gainesville Highlands JacksonvilleThe VillagesManatee-Sarasota Melbourne

NaplesOcalaOrlandoPensacolaTallahasseeTampaTreasure Coast/StuartWestonVero Beach

Visit www.ALSAFL.org or call us at 1-888-257-1717, ext. 113, for support group dates and locations.

Follow us on the web:

Register today at: www.WalktoDefeatALS.org

Design and content by Alissa Gutierrez